Death in the neonatal intensive care unit: changing patterns of end of life care over two decades

Background: Death remains a common event in the neonatal intensive care unit, and often involves limitation or withdrawal of life sustaining treatment. Objective: To document changes in the causes of death and its management over the last two decades. Methods: An audit of infants dying in the neonatal intensive care unit was performed during two epochs (1985–1987 and 1999–2001). The principal diagnoses of infants who died were recorded, as well as their apparent prognoses, and any decisions to limit or withdraw medical treatment. Results: In epoch 1, 132 infants died out of 1362 admissions (9.7%), and in epoch 2 there were 111 deaths out of 1776 admissions (6.2%; p<0.001). Approximately three quarters of infants died after withdrawal of life sustaining treatment in both epochs. There was a significant reduction in the proportion of deaths from chromosomal abnormalities, and from neural tube defects in epoch 2. Conclusions: There have been substantial changes in the illnesses leading to death in the neonatal intensive care unit. These may reflect the combined effects of prenatal diagnosis and changing community and medical attitudes.